T+132 The only predictable thing about a BMT is that it is unpredictable!

Am I happy to be home, "yes" for many reasons, is it harder to be home "yes" for many reasons.

I find I am busier at home than I was in Minneapolis. Everything was "contained" in a 2 miles radius there and our nurse coordinator... well "coordinated" everything for us including pharmacy and other doctors appts. Here the hospital is 25 mins away on a good day/time and we have been there multiple times each week including this one.  The first week back wasn't too bad, we had our initial consultation with the BMT Dr.s at Phoenix Children's along with our normal lab work and then had to go back for his weekly echo and repeat labs since some of his numbers were low and we had medication adjustments.  Aggie was here that week with us so it was nice to have her along for those appointments.  The following week we again had our normal Monday morning labs and met with his assigned BMT Dr. but due to low magnesium had immediate IV infusion.  Low magnesium can cause seizures so we also started on overnight magnesium infusions.  I'm such a pro at hooking him up to his IV meds they didn't even need to show me how.  Then again another trip for an echo and repeat labs.  A trip like this is Minneapolis took me an hour tops whereas now it may take 3 - 4 hrs.  Repeat labs still showed low magnesium and now potassium so we added potassium to his nightly infusions.  And we had to follow up with repeat labs on Friday.  Friday's labs showed all his electrolytes were now in alignment (but we still are keeping the nightly infusions of magnesium) but all of his CBC numbers fell; his white blood cells, his red blood cells, his hemoglobin and his platelets.  Not much left in the blood but plasma.  So the Dr. ordered blood and for us to be prepared for infusion on Monday.  This past Monday we had labs, met with the BMT Dr., met with Cardiology for the ongoing pericardial effussion (fluid around his heart) and another echo.  The fluid is still there and maybe slightly increasing but we are done with the steroid treatment so he recommended an ibuprofen regimen along with an increase in Lasix (diurectic). The problem with Lasix is that it has an adverse effect on the kidneys since essentially its purpose is to dry the system out and it also has an adverse effect on the electrolytes.  So can't wait to see what that does to his lab work tomorrow. Actually it is tomorrow already as I did not get this posted yesterday so his numbers are even lower today and he is hooked up.  His blood type has officially switched to donor blood type.  

We will spend 6 hrs getting blood and IVIG, a white blood cell stimulator.   You wouldn't tell from the outside that he is running on such low "fumes" as he is happy and energetic and feisty as ever!  Scratch that, today his breathing is labored and he was restless all night.  He could use lots of prayers today!

 Oh, and I found out when I tried to get his refills at my local CVS, that they are all compounded meds so I have to go to a compounding pharmacy and it took them nearly 3 days to get them refilled, meanwhile he went without a couple of them for a day or so.

I find I miss my RMH family and just being able to talk to the other parents about my day and the challenges and finding comfort in the support that they and that house brings.  We text and keep up on facebook but it's not the same as being with each other in person.  Some of our friends are not doing so well and it's also hard not being there in person to comfort them.  

Paul and I went to the PCH RMH house yesterday to drop off some soda tabs and ask about volunteer needs.  It is much smaller and hotel-like.  Not the "homey" Minneapolis RMH that we were fortunate to stay in.  My Phoenix friends have done a great job at welcoming us home and supporting us here including a mini-welcome home party in our driveway with a sign and balloons, along with organizing a "Take them a Meal" plan, having Peyton over and just simply calling to check in.  Others have helped run errands like grocery shopping and picking up prescriptions, etc.  I don't know how I would do all of it on my own and am grateful for all the wonderful people in my life that continue to help us now that we are home.

Meanwhile, Peyton is having a hard time adjusting to life without 24/7 friends.  She is so social and loves her friends and loves to play (the RMH house was a dream palace for her.. it even had a 2 story indoor castle!) and is constantly asking to go over to friend's house.  The two weekends were pretty packed with Birthday parties including her own (she got roller skates) and visits fortunately but it slowed down this past weekend.  I did get her into a pre-school two mornings a week so that is helping but there are still 8 hrs in her day that she is not with friends.  She blended right in with the other kids at school though.  She had to grow up this past summer much like I had to when i was her age.  She talks about Bone Marrow Transplants, hospitals, X-rays, bones and shots like it is second nature.  She also talks about death and dying and asks what that means.  I learned that the hard way at her age and I hope to spare her the same.

Otherwise we are trying to get our house back in order, we've made to do lists and Paul is doing a good job this week knocking out his items, I am falling short on mine.  We also have lists for when my parents are here next which will keep my Dad busy and happy.  We got our X-mas tree out and up this past weekend and put on the Christmas music!  Normally I don't like to do this prior to Thanksgiving but we have 1 less week between the two holidays this year and it just felt like we could use that extra joy this year.

Lastly, two people close to me lost their own children in the past month (not from the RMH). One who's child went through a similar (but not the same) journey as Coleson and another very unexpectedly. My heart goes out to those parents and families and their loss hits me extremely hard.  I have tried to prepare myself for that possibility, repeatedly every time we face a new challenge, and it really is unimaginable.

This may seem like a somber post but actually I am doing OK.  Is it extremely difficult and tiring, Yes, but I am surrounded by lots of wonderful friends who continue to stand by my side and for that I am grateful.

T+112 Ronald McDonald House Donations Doubled on Nov 14th & RMH Video featuring Paul and Cara

I don't know if I shared this Video on my blog with Paul and I talking about how the RMH and their volunteers helped us - both of us holding back tears. There is also several cameos of my family and our new family/friends.  They even used my line to summarize at the end.. It was INVALUABLE.  The RMH Oak street starts about 3:40 mins into it.  

http://www.youtube.com/watch?v=cEWF9_1W7eE&sns=em

Please see this amazing opportunity to have your donations to RMH Upper Mid-West doubled on Nov 14th.  If you were at all considering donating to this organization Nov 14th is the day to do it!

Give to the Max on Thursday, November 14

Families are never required to pay for services and thanks to your support, we are there for nearly 5,000 families a year. Read our amazing family stories Friends, As you may know, this Thursday, November 14 is the annual Give to the Max Day for Minnesota non-profits. Last year on this day, we raised over $23,000 to help families with sick or injured children focus on what’s important: being together when family matters most. We would love for you to help us do it again. Donate now At the Ronald McDonald House, families are never required to pay for services and with your generous support, we continue to be there for them when they need us most. You can literally double your donation Thanks to the generosity of Johnstech International, every dollar you donate on November 14 will be matched (up to $12,500). Additionally, every donation gives us the chance to win even more money through random drawings and power hour contests throughout the day.  Schedule your donation And this year, they’ve made it so easy. You can schedule your donation. Go to our Give to the Max page and look for the checkbox that says "Make this donation count for Give to the Max Day." The donation will be deducted from your credit or debit card at 12am on November 14. As always, we thank you for your support as we work together to create a caring community of support for families going through the storm of a child’s illness.

GIVE to the MAX Day DONATE HERE Your donation is doubled! Thanks to the generosity of Johnstech International, every donation will be doubled (up to $12,500). SCHEDULE YOUR DONATION This year, it's more convenient than ever. You can schedule your donation before the day. Look for the checkbox that says "Make this donation count for Give to the Max Day." SCHEDULE NOW

"We're coming home, We're coming home, tell the world we're coming home!"

We're "Leaving on a jet plane"...

"No time to dilly dally, we got to get a going"!

(quite the combination of song lyrics from 3 very different genres/songs).

Our  journey isn't over by any means, this was just the beginning!

T+104 Still here for the snow

Day T+100 came and went and we did not get to go home as expected but we celebrated the day none the less. Coleson got released the Saturday prior to last but the still has some fluid around the heart so the Dr. put him on a month long steroid treatment as well as Lasix (diuretic) to try to try up the fluid.  In addition, he was put on more meds; antibiotics, inhalers, flonase, protonix on top of his existing 8 or so.  I have lost count of the number of meds he gets now.  He is having regular echos which still shows fluid but has remained stable for the past week.  He has another echo tomorrow and if the fluid has not increased Dr. Miller will release us to go home and we will continue our regular weekly follow up, labs and echos at Phoenix Childrens!

Meanwhile we said goodbye to two more families on Sunday who were fortunate enough to go home.  Coleson's BMT day "brother", Caleb was released on his 100th day. They were transplanted on the same day though Caleb has Fanconi Anemia.

 Also a sweet young boy, Eleafar, who has epidermolysis bullosa (otherwise known as Butterfly Kids) was also able to go home as well.  Caleb's family is one we are very close to and Peyton was best buds with Eleafar's brother, Gabo and both families will truly be missed.  I particularly am inspired by Eleafar's mother, Margarita, who has had to take tremendous care of him since he was born (I won't go into the graphic details) and also has 3 other kids. If there was one woman in the world Paul and I could help, it would be her.  She has sacrificed so much of her own life for her boy.  I tell you, if everyone could spend a day at a children's hospital or a Ronald McDonald house visiting and talking with families of seriously sick kids, there would be much more compassion and acceptance in the world...




We had a fun Halloween; Peyton was a kitty cat and Coleson, fittingly, a monkey.  The Cyclosporine makes him "furry" and it is literally everywhere.  He will be on it until his 6 month checkup in January and I can't imagine we will even be able to see skin by then.

Meanwhile we are starting to pack up in anticipation of getting released and trying to keep enough Cheetos and ketchup stocked to keep up with Coleson's appetite. Since he is back on steroids, he is eating morning to night, unfortunately his food of choice is Cheetos and Ketchup.  His hands are literally stained orange.  

T+90 Daddy is not allowed to leave any more!

Just like clockwork, Paul is leaving for a business trip and Coleson goes into emergency surgery.  Let me first say that Coleson is such a tough dude.  We are always surprised when we walk into clinic and they hit us with some bad news since most of the time you wouldn't know it from the way he acts.  He had recovered from his last drop in Oxygen sats well, but started to have a dry cough on Saturday.  Back up 2 days earlier and he sounded great in clinic and his sats were still high 90s.  Fortunately we have a very thorough Dr. and he was not merely satisfied with the fact that he sounded good, he wanted to get to the root cause of all his coughing even though at that time it had disappeared.  So Thursday he ordered a more detailed CT scan... which Coleson handled like a pro.  Typically little ones don't stay still in the machine, but he did so good.  I hadn't heard anything by the weekend so was feeling pretty good that nothing remarkable showed up and Peyton and I enjoyed a nice weekend with our old neighbors and her first best friend, Sammy and Bree.  It was a quick visit but we did have time to see Disney's Live Pirates and Princess, courtesy of the RMH on Sunday morning.
So we walked into clinic on Monday at 8:30 and the Dr. told us that the CT scan revealed some fluid around his heart (periocardial effusion) and he ordered an echo for 10:00.  Plus late Friday he had gotten results from his lab work that he tested positive for Adno virus (though not a high cell count of it) and we were scheduled to see a pulmonologist at 10:40.  Well, we never made it to pulmonology because the echo revealed enough fluid around the heart to schedule immediate surgery (Periocardialcentesis) As a side note, I am going to have to re-write the ABC's of MPS as we've added several new words over the past 90 days.
So we got readmitted to the BMT ward, in the same room as our last stay, and prepared for surgery. In the meantime we met with all kinds of Dr.s & Anesthetists to review the procedures, risks, etc.  The cardiac surgeon even said, that he wouldn't know by the way Coleson was jumping and laughing that his heart function was being compromised.  So Coleson went into surgery and Paul left for the airport and waited for me to confirm that everything was OK,  about an hour later I was able to do.  They got 6 ounces of fluid from around his heart and put a drain in there so any additional fluid would be able to drain out.  We've gotten another 6 ounces in the past 24 hrs.  Just to give you a comparison, it takes 9 hrs of his G-Tube feeds to equal 12 ounces.  Needless to say that's a lot of fluid around his little heart!  He's been sleeping pretty soundly for the past few hours so not sure if anymore has built up.  Usually a lot drains when we move him which we try not to do since he's in quite a bit of pain.
We are in wait and see mode now.  We are waiting for the fluid to stop draining, waiting for the adno cultures to come back to determine next steps.  It could be as simple as do nothing if adno comes back negative, or if it comes back positive, to take him off his immuno-suppressent meds early (which is what is used to prevent Graft vs. Host disease) and hope his own immune system can fight off the infection, or put him on an IV anti-viral medication which unfortunately can damage the kidneys, sometimes to the point of requiring dialysis.  I don't like the sound of either option so am hoping the adno virus cultures come back negative and the earlier labs had gotten contaminated.
Meanwhile, my baby boy needs me and I am trying to just focus on being mommy right now and just holding him so he can be as comfortable as possible.  I have been trying to do too much and yesterday scared me back to the reality of this awful disease and the risks associated with it.  He needs me right now more than ever as do I him.  Please keep him in your hopes and prayers.  He needs to feel the love and support from his worldwide family.

T+83 My Turn, My Turn

Where do I begin???  A lot can happen around here in 11 days!  First, last Monday, Coleson reminded us why we are all here... His Oxygen level was at 82% when we were in clinic.  After much hesitation, the dr. agreed to not admit him as long as his oxygen levels responded to an Albuterol neb treatment...which it did, although only temporary since Albuterol is only a fast acting, short lived drug.  So after a long day at clinic, we were sent home with 4x daily Albuterol nebs, steroids and azythromycin, yet another antibiotic.  We had to check in daily for oxygen level sats.  On Tuesday, his oxygen was in the mid-80s, by Wednesday low 90s and by Friday mid-90s.  Yesterday it was 98% and his lungs never sounded better,which you would think I would be ecstatic about, and I was, briefly.  However, since he did respond to that treatment, the Dr. Informed me that he is still very cautious right now.  The positive response could be for 1 of 3 reasons: 1. It could be because it actually took care of a lingering virus or bacteria, 2. It is only temporarily "masking" a bacteria since azythromycin can do that or 3. That he could have a localized GVHD (graft vs. Host disease) to the lungs.  It just happens that steroids and azythromycin is the treatment for GVHD of the lungs, with the exception that it is in higher doses and for 6-9 months!    Needless to say, I can't imagine giving him steroids for that long!  So we are on close watch right now and have to take him back on Thursday to check his sats and see how his lungs sound.

Otherwise I had a great week with visits from Brendon and Sandy and we finally got to eat at "The Nook" a famous burger dive.  They all said the burgers were the best!  I scored big time at Bingo ( which I never do) and the best part of my week was when I opened my door on Friday evening to see my AZ friends Kim, Suzette and Stefanie!   They totally surprised me and stole me away for the weekend.  Thank you Brian, Chris and Richard for taking their kids for the weekend and Paul and Rachel for taking mine, so I could shed my mursing and mommy duties and just be a "girl".  I actually enjoyed shopping again.  Also thanks to Laurel who kept up the rouse.  I did suspect something was up, but did not expect to see those 3 at my door.  We went to the Diercks Bentley concert, toured the sculpture garden, shopped at Mall of America and shared some great laughs and some tears too!  

Out return date is still a bit tentative with this new possibility of GVHD but are still hoping to go home on November 1st.  

T+72 Happy 2nd Birthday (and 72 day re-birthday) Coleson!

Happy Birthday my beautiful baby boy!  You have been through more in your 2 years of life than most in their lifetime.  You have amazing spirit and determination.  I promise to be by your side every day of your life as long you promise to be by mine the rest of my life!

Coleson had the best birthday he could have had.  Not necessarily from a health perspective but from a social perspective.  The Honeywell Minneapolis Law and Contracts team (led by Janna) hosted the RMH dinner Friday night and put on a little birthday party for Coleson complete with an awesome birthday cake and presents for both kids!

I am grateful to at least be in a city with lots of friends near by!  Thanks Laura, Barry, Tim, Jodi, Rebecca, Janna, Debra, Sue and Michelle!  Fittingly, the kids got his and her airplanes along with books and a phone.  

The last week was pretty full.  Just as I feared,  Coleson's congestion and cough returned within days of ending steroids.  He stopped eating so we are back to g-tube feeds and vomiting...  

Sunday we met my friend Nicole and her family at the White Bear Lake Apple Orchard.  We picked pumpkins, went thru a corn maze and on a hay ride thru the orchard,minus the hay.  

Sunday night Telma and Sam stopped by for a quick visit and to drop off some pictures that the kids made for Peyton and Coleson.

Monday I threw out my lower back.   By Tuesday morning it was worse so I went to the Drs.  I swear Paul, Peyton and I have been to the drs. more in the past 4 months than ever..we'll maybe not me.  The dr. Put me on muscle relaxers and it is slowly getting better.  On a side note, after a small adjustment to my pacemaker, it appears that is working just fine.  There was a setting that was limiting my sinus node to beat fast enough to support my running.  

Another Hurler family is here for a couple weeks while their son (6yrs.) is getting knee replacement surgery (I told you this doesn't end with the BMT!).  They have 2 kids with Hurlers, their youngest daughter is 18 months old and is 1 year post transplant.  Since they knew within 2 weeks of birth that she had Hurlers they were able to start her on enzyme right away and she had her BMT at 5months.  boy does it make a big difference!  Not to lessen the hardships she will have in life but hopefully it will prevent her from having as many side effects and surgeries.  Only time will tell.  It seems odd to me that someone who is 6 months younger than Coleson is already celebrating 1 year post BMT.  They are a really nice family and I again appreciate being able to talk with another family..it is so helpful.  Thanks RMH for creating a place where that can happen.

We are within 30 days of going home as long as nothing prevents that from happening.  We are still trying to figure out the logistics.  Coleson hates wearing his mask, though we are trying to use it more and more, so a plane ride seems almost impossible but driving home is too risky for him.  Paul is looking into Angel flights but Peyton would not be able to fly with us.  We'll figure it out cuz winter is coming to Minnesota and I do not want to be here when it hits!  It is a beautiful (but chilly) fall!